Nintednib trial..

[Llooll]

Hi All,

Is anyone on a nintednib trial for ovarian clear cell, I really can't seem to find out much about it?

thanks x

[Michellemasson29]

Hi yes I am, I have been since January.

I was one of the last on trial, but is now registered in U.K..

I have had a lot of problems getting the dose right as started on 300mg and was really ill. It really is trial and error? Have since went down to 200mg which ended up depleting my red blood cells . Do had to have a few blood transfusions, I’m now on 100mg and doing ok for last 5 weeks.

My oncologist really believes in this drug and has good results in keeping in remission longer? Also since being registered she said no one will ever start on 300mgs. They will start at 200mg then it’s all about adjusting to suit the individual. As all side affects are different for each person. Hope this helps a little michelle

[Llooll in reply to Michellemasson29]

Thank you so much for replying. My sister had clear cell ovarian June last year grade 2c. After 8hr op & complete debulking, everything removed, she stated chemo, she had 10 rounds and in Feb this year she was clear but by March blood markers up & pet scan showed cancer spread to liver, lungs, chest etc they can't operate & gave her months. she is young & full of life we can't believe it! They have now offered her the nintedanib trial so we are hoping this may slow it down, it's such a dreadful disease & reading comments on this site is helping. I also thought about trying to seek treatment abroad to see if that will help. Wishing you all the very best with the trial, it seems like you are on the right track so keeping everything crossed for a good result for you and all the other lovely ladies here.

[devotedtolife55]

Hi, I had clear cell but am one of the lucky ones currently still NED after nearly 6 years. I never feel I am over this and am always looking out to see what people currently fighting the disease are doing. I made a note of two trials where people had stated they had good results and they were Patriot Trial and Peacocc Trial, both, I think, under University College Hospital London. I just googled nintednib trials and lots of information came up from Cancer Research UK, where they are doing trials comparing it with Chemotherapy and there is a free phone number to get in touch. Hope this is helpful - wishing you the very best.

[Jingyu in reply to devotedtolife55]

hi, do you have some results about Patriot Trial and Peacocc trial for Clear Cell Ovarian Cancer? I am stage 3 and am in remission since 5 months ,but I am also following everyday the results of new drug development and trials..... Thanks

[devotedtolife55 in reply to Jingyu]

Hi Jingyu,

Thank you for your message. I had heard that Clear Cell was difficult to treat so started googling to see what was out there if mine ever came back. This was some time ago but I came across positive comments for the two trials mentioned and I wrote down UCLH thinking I would check this out if necessary - thankfully I am currently 6.5 years NED after 1C. I just googled again and Ovacome came up with a lady saying she was on the Patriot trial and so far so good but it was early days. If you search the Ovacome website, all the listings will come up and, as we have a lady on the trial amongst us, it would be interesting to hear from her. Ovacome themselves may also have details for you. Hope this has helped.